Steatocystoma Multiplex cause, treatment and diet for preven

EmilSMCro · Newbie Joined: 27 Dec 2007 Posts: 6

I'll try to make a web page that we'll call Steatocystoma club.What do you think about it? It think we have to fight for us and most of all we have to find the solutions for our children!!!!!!!!!!!!!!!!!!!

EmilSMCro · Newbie Joined: 27 Dec 2007 Posts: 6

Hi people!
As you can guess I also have SM. I have multiple cysts on my chest, neck and forehead, that mean a lot. My father has it, my grandfather had, and a few more members of my family has this disease. So I can say that I've seen many different types of SM. The truth is that there isn't any cure for this disease. I'm a young scientist(chemist) and I believe that there must be a solution.
About the treatment:
Now I'm on 0.7 mg/kg Roaccutane therapy, my dermatologist(who God by himself sent to me Smile

) gave me that. It will slow the growth of the cyst for a time. We are also making incisions, small cut with a scalpel, then she squeeze and with a thin pin(needle) she drags the whole capsule out. The other method is that she put in the cyst a wire and through that wire goes strong electricity. That coagulates the content inside cyst and then she squeeze it(this is good for smaller ones). She said that in a year all of them will be out and it'll be ok. I don't have scars, maybe a little little ones. Some of my cysts on my neck have 7 mm diameter.
Guys I would very much like if we could make our own club where we could share informations about this. I was very happy when I found this forum: It's easier when you met people who have the same problem like you do, and psychological and other problems.
I think that SM- guys and girls should live healthy, I think that essential acids are good for us, healthy food and lot of water could slow down the growth. We can experiment and share the results and it could help us!!! Smile

***** and we can communicate through this

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Guest · Guest

Does anyone know a good doctor with SM experience in the UK, preferrably in the south east or London region at all?

MedSeeker · Newbie Joined: 05 Jul 2007 Posts: 7

hey brams1 sorry for the late reply...

i would actually appreciate if you could share with me Dr. Anderson's information through email - I know he (or his assistant) wasn't too helpful in the first place, but if I get more information then perhaps I will try to contact him again and if all goes well hopefully report back to all of you with the results.

If you don't mind can you email me the information that you received? I tried but couldn't find your email address on this site, so the one I used to register is:
********

thanks a lot for the help it is greatly appreciated

p.s. I am currently attempting to contact another dermatology expert, and if successful i will get back to all of you with the results.

**edited by moderator**emails not allowed**

brams1 · Newbie Joined: 30 Nov 2007 Posts: 4

Medseeker email me ***** and i can give you the info
Dr Anderson sent me.Also to Emilsmcro if you start a web page where we can share treatment options that would be great ,as alot of you know the ave. dermatologist isnt overly interested or compassionate about treating this condition,but it sounds like some of you are lucky enough to find a good one.
Brams

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EmilSMCro · Newbie Joined: 27 Dec 2007 Posts: 6

Hi guys!

I'll definitely form a web page called **** and I really hope we will communicate through it and find the solution for our problems. If anyone has a question, just ask. I have a lot of experience with SM!!!!!
Smile

Kind regards!

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EmilSMCro · Newbie Joined: 27 Dec 2007 Posts: 6

Steatocystoma multiplex with unusually prominent cysts on the face

* R. HOLMES11St Thomas' Hospital, Lambeth Palace Road, London SE1 7EH AND
* M. M. BLACK11St Thomas' Hospital, Lambeth Palace Road, London SE1 7EH

*
1St Thomas' Hospital, Lambeth Palace Road, London SE1 7EH

SUMMARY

A patient is described who had unusually large facial cysts which histologically were typical of steatocystoma multiplex. An excellent cosmetic result was obtained after plastic surgery.
Does anyone has this article, if you have please mail me to ***

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chinajumbo1978 · Newbie Joined: 25 Jun 2007 Posts: 4

Hi All, whilst all of you appear to be very helpful in helping one another seeking solutions, do you actually realise steadyhealth.com actually deletes your contact details in particular web address and email address.

To help one another get in touch and communicate further, I suggest we leave either phone numbers or mailing address rather than emails as email address will be simply get wiped out and we are back to square one again!

Jumbo

victor_dsp · Newbie Joined: 13 Dec 2007 Posts: 2

To fellow SM folks in SG:

I consulted dermas in SG who have the CO2 laser equipment on the practicalities of using it to deal with the cysts.

At least two dermas have advised me that the CO2 laser leaves scars that are similar to what you get from cigarette burn marks...

Which at the end of the day means it wouldnt make you better off >_<

End of sharing. P/S: Can anyone enlighten me more about the appropriate diets that we should be having? like abstaining from oily food, i'm not so sure if eating oily food will affect SM actually...

By the way, what is it meant by "essential acids"?

EmilSMCro · Newbie Joined: 27 Dec 2007 Posts: 6

Essential oil acids, when you drink them they make the fat acids very low.My dermatologist, and me too, we think that there isn't any correlation between food and the growth of cysts. It's the gen who gives the order to skin what to do and our skin does this Smile

. But I would recommend to drink essential acids to everyone because has many positive effects..... Smile

Steatocystoma Multiplex cause, treatment and diet for preven

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